Just a little background...my husband was seeing a regular GI for his UC,recently we decided to get another opinion from a UC specialist(associated with a very good research hospital), now we are totally confused. They are saying the opposite of one another, but neither knows about the other...

1)GI says that food effects colitis, UC specialist says food has nothing to do with colitis and its sypmtoms (this made my husband really happy). He even said my husband could eat anything.

2) GI is extremely hesitant about putting my husband on steroids, so suggested 6-MP, while the UC specialist said that my husband needs to get on steroids temporarily(not more than 3 mnths.) while on Humira in order to get this flare under control (been going on for a year & he's lost a lot of weight)

3) GI doesn't want to give steroid enema b/c it gets absorbed in system and doesn't think it is good for that reason. The UC specialist suggested a hydrocortisone enema, he said vitamin E enema is not a good idea(this shocked me, so I asked why...he said he wouldn't recommend it, but never told me why).

4) Specialist didn't really promote probiotics. He said that there is no proof, you can take it, but it doesn't really help, but he also said probiotics is the future of this disease. So, I was wondering, why not start taking it now then?

6) GI said a low residue diet will definitely help dealing with colitis, while specialist said the more restrictive the diet is the more weight loss there will be and it doesn't benefit anyway.

The specialist wants to do a colonoscopy to see what he is dealing with exactly and wants to treat accordingly. He has suggested that my husband increase the Humira dosage, take predisone, and he put him another drug called: Diphenoxylate. This drug has really helped (I hope I don't jinx it) my husband deal with the urgency. He is going to be traveling so he asked for something to help with the urgency. This drug has taken the stress out of having to rush to the restroom withing seconds. Do any of you use this drug and can u take it for a long period of time?

The GI suggests decreasing the amount of colozal and putting my husband on a 6-MP.

My questions are which doc. should we listen too and which drug is the better of the evil: 6-MP or steroids?

thanks for listening!Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.Xifaxan-on and offCurrent meds. : Humira, Colazal 12/day, Probiotic-Align, Fish OilHas never gone into remission

UC spouse said...1)GI says that food effects colitis, UC specialist says food has nothing to do with colitis and its sypmtoms (this made my husband really happy). He even said my husband could eat anything.

My personal experience is that food has little effect on mine. I kept a food diary for over year, eleminating certain foods for a period trying to chart a difference in symptoms. Unfortunately no patern could be established.2) GI is extremely hesitant about putting my husband on steroids, so suggested 6-MP, while the UC specialist said that my husband needs to get on steroids temporarily(not more than 3 mnths.) while on Humira in order to get this flare under control (been going on for a year & he's lost a lot of weight)

Again, my experience with a few GIs and with research is that the steroids are used to "instigate" a remision the other meds, Humira, Asocal, and Imuran are "maintenance" meds. These meds work sometimes only after a remission is achieved. There is also the unfortunate situation like mine where a remission can't be achieved by steroids, or any other med we have tried so far.

3) GI doesn't want to give steroid enema b/c it gets absorbed in system and doesn't think it is good for that reason. The UC specialist suggested a hydrocortisone enema, he said vitamin E enema is not a good idea(this shocked me, so I asked why...he said he wouldn't recommend it, but never told me why).

It sounds like the specialist is wanting to try all options that have a proven record. He apparently sees no need for the vitamin E but if you feel that strongly you could probably push to get his reasoning.

4) Specialist didn't really promote probiotics. He said that there is no proof, you can take it, but it doesn't really help, but he also said probiotics is the future of this disease. So, I was wondering, why not start taking it now then?

He is dismissing the probiotics because there is no track record. It sounds like he is saying if you want to try go ahead but his expertise is not going to promote it because he doesn't use it. If you want to try it I would see no reason why it would interfere with what he is planning on doing.

I have never dealt with B 12 shots but I am guessing you are suggesting they will help increase the lost energy. If that is the case your body naturally slows you down and decreases your energy when it is trying to heal damage. With this disease comes a lot of damage to the colon. Being tired all of the time does stink but allowing your body to rest when tired is only going to help your body naturally deal with it.

6) GI said a low residue diet will definitely help dealing with colitis, while specialist said the more restrictive the diet is the more weight loss there will be and it doesn't benefit anyway.

Just my best guess but I would go with specialist. Restricting your diet too far will cause more health problems including weight loss. A low residue diet might cut down on the number of bowel movements but does it get rid of the inflimation and the damaging part of the disease? I have gone days without eating when my attacks become severe and still have bowel movents with blood and mucus so apparently the disease is still doing the damage.

I hope some of my answers help, most are strictly of my own opinion. I would lean toward the specialist myself. He may be wanting to step back on a few items but that could just be his way of going though the steps so he can continue to make accurate assesments. The most important thing I have found when selecting a GI is finding one I can "openly" talk to. There are many things with this disease that are uncomfortable to talk about to say the least. I have found it easier to discuss this with my PCP so I spend time talking with her and she is real good communicating my info to my GI doc.

Diagnosed with UC 2003 (but had sympoms as far back as1993)

Just found to have a large hiatal hernia 5/2/08

Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids

I vote for the specialist! Any GI who claims that food effects UC would raise a giant red flag in my mind. The specialist sounds a little more in touch. I don't know about the B12 shots, but all the other things the specialist said are right on target with the current medical standards of care on UC.

The specialist sounds right on target. My specialist is really hesistant to put me on steroids, but does it if I need to get a flare under control. They usually put you into remission fairly quickly, then the maintenance drugs keep you there. As for the probiotic, my Gi does research too, and they did a study on probiotics. They do not help a flare, but they may keep you in remission longer. There is no harm in taking them, so go for it. They will definately help you if your UC is caused by C.diff or overgrowth of yeasts. In my experience and per my GI, food has nothing to do with UC. I know a lot of people on this site will disagree, but that has been my experience. I do notice that the older I get, the less junk I can tolerate. I chalk that up to living with a pretty bland diet most of the time and my age. I have never been told to get B-12 shots, I think it can't hurt, but I don't know if he will see any benefit from it. It really is trial and error and I would take the steroids.....they have been the wonder drug for me. My last dose was 6 weeks long, and I have been in remission ever since......4 months now. Best of luck and I hope you feel better soon.

The course and recommendations the specialist made are the commonly accepted knowledge about UC. We all try a lot of things our GI's tell us won't work. If they help us, that's great. If not, we can stop worrying about them. They're used to this, and generally tolerant of it as long as they don't feel what we're doing might hurt us.

I also don't find that diet affects my condition as far as pain, bleeding, mucus, etc. Some foods eaten in excess of a small amount will give me much softer stools, but that's always been the case. If I decide to eat a high-fat or fiber dish, I know there'll be a price to pay and I decide accordingly.

As far as which doctor to pick, you have to decide for yourself who you trust. I'd go with the specialist myself, but you may feel different. What you should NOT do is keep going to both and comparing. Medicine is a science, but there's also a bit of an art to it, and different docs will have different approaches and treatment preferences. Stick to one for the best results.

Judy

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine

Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.

It sounds like the big difference is that the Gi wants 6mp which will take 3-6 months to see ANY results while the specialist wants to try to stop the flare now with pred. The steroids as evil as they are will help immediatly while your husband will likely have no relief for several months with 6mp. That said. I hate steroids. More than hate. I just got off a "short" course that ended up being 2 years due to steroid dependence. But it works. If your husband has been sick for a long time and wants relief now I would lean towards the specialist.

The Gi seems to embarce all ideas when it comes to UC while the specialist follows what science has proven. I agree that your hubby should try a food diary and if he is willing try probiotics. Niether will hurt him even if they don't help him.Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!Prontonix once daily for acid reflux, zofran twice daily for nauseaRemicade started 3/1/08...just had 3rd infusion

The only food that has ever had an adverse effect on me was Green Chillie. Just one of the worst experences of my life. Lets just leave it at that. Other than that food has no real effect on my UC.Diagnosed UC 12/2007

I don't think a B-12 shot would help someone with UC unless that person had their B-12 levels checked and they came back low for some reason. B-12 is absorbed in the small intestine, so UC shouldn't affect it, unless he's not eating enough foods that have B-12 in them. My multivitamin has 100% of the daily value for B-12.

Is there one of the 2 doctors you and your husband feel more comfortable with? You could see both and let both know that you're seeing each of them. For example, maybe see the specialist once a year or something and have them communicate with each other. I know at least one other person here was doing that. I don't know how well that would work though if they're telling you completely different things. I totally understand how frustrating it is when you have 2 different GIs tell you different things. It sucks. I don't have experience with 6-mp or steroids so I can't help there.24 years oldDiagnosed with UC March 2007; yet to go into complete remissionAsacol 4 tablets 3x/day

I'd go with the specialist, who is the most likely to get your husband to remission. 3 months on Pred did it for me when I had a severe left-sided flare that nearly blocked my colon. If he goes that route, he should eat as balanced a diet as possible, avoid greasy foods, heavy salt & spices, and supplement calcium & vitamin D to protect bones. When the specialist says probiotics are the future, he means that the scientific research to back up their use in UC treatment has yet to be done. Good luck with your decision-making & please keep us posted. P.S. The hydrocortisone enemas can be very helpful in treating UC from the descending colon downward-- big relief for urgency! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

I'd go with the specialist too. We all hate pred and it's side effects, but even if he just does the cortenemas, they would help and they are far less harmful than the oral pred. Food has no effect on my uC either, well I should say "the types of food have not effect" When I am in a flare, it seems like it's just the fact that I have food in me period...........Good Luck in making your choice. Has either Doc talked about Rowasa enemas? They are pretty helpful also........*******Donna*******

diagnosed with uc 27 years ago. Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)

In a flare for 2 very long years which Asacol didn't help at all. Finally in remission again since Jan 2008, can't believe it..............

I agree...we need to stick to one doc. to get the best results. That was our dilemma...

I had no idea Humira was a maintenance drug. I thought it was to help induce remission since it is such a strong drug. Why would his doc. prescribe that then? Wouldn't he want my husband to get into remission first, before giving a maintenance drug?

It seems noone has heard of B-12 shots as being a symptom reliever. Actually, I am starting to doubt the source it came from (mom's friend). This person said that her symptoms disappeared with B-12 shots.

The reason the GI was against steroids was that he said steroids are a temporary fix and that even if you get into remission, the next time you have a flare, it will most likely be worse than the previous. Is this true? My husband has kept a food diary, but he cannot see any patterns, except the obvious no fried or spicey. The GI told him no cakes or fried. The specialist said he could eat burgers and fried food!!!

Is 6-MP as strong as steroids? Have people seen much success with 6-MP?

Has anyone been on this drug: Diphenoxylate? If so, what kind of results did u see? Can this be taken long term?Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.Xifaxan-on and offCurrent meds. : Humira, Colazal 12/day, Probiotic-Align, Fish OilHas never gone into remission

They both have some good points. I wouldn't put much faith in any doctor that told me to eat whatever I wanted though, lol. IMO, any health care provider telling people that should be taken out back and shot.

Oh, and I take the diphenoxylate. You HAVE to watch your water intake with this stuff and make sure you drink plenty of it. It will dehydrate you. I fooled around on Friday at this golf scramble and didn't drink the water I brought with me for the first hour I was practiceing hitting balls. My foot started cramping up, ACK and I had to go grab a powerade to rehydrate along with a bottle of water. I give myself about an hour for it to kick in when I take it. It slows things down alot. It makes me tired at times too. I can't imagine using it everyday, but I may do a couple a week. You can cut them in half too, just do it slow because they break apart really easy.Proctitis DX 1998Lialda 1x dayHydrocort Enema As Needed

As a former B-12 user it is only recommended when the stores of B-12 are depleted. For those who are not depleted it does give a temporary energy boost but not one that is going to sustain a chronically ill person. You can get the same benefit from caffeine without the cost. Having had chronic fatigure from UC, lack of B-12, and anemia the only thing that really helps is getting the disease in remission or getting rid of the disease.

My guess on the vitamin E enemas is that vitamin E is an anticoagulant. Since your husband is ill with a disease that causes blood loss, this might lead to more loss. Or if he was facing any type of surgery in the near future this would elevate the risk. My SIL took vitamin E daily along with other vitamins and almost died on the OR table due to unforseen blood loss.

UC Spouse, Humira is used both to induce and maintain remissions, as are most of the meds we take. Prednisone and other steroids are the exception. They are intended for short-term use to induce remission only, partially because of the horrendous long-term side effects and partially because their effectiveness decreases over time.

One can't really compare one drug with another in terms of "strength." Each drug works in a slightly different way, and will work well for some people but not for others. The majority of people diagnosed with UC reach and maintain remission with a 5-ASA drug. Occasional flares are treated with Pred to re-establish the remission, then it is stopped and the 5-ASA is used to maintain it. Most of those lucky people aren't here.

Drugs like Azathioprine, 6-MP, Remicade, Humira and others are used when the 5-ASA's alone won't sustain a remission.

As for diet, if you read here you'll see that it's different for each of us. I usually just suggest staying away from whatever foods seem to bother you, as there's no scientific proof one way or the other. Some people feel they're helped by highly restrictive diets, while others feel no foods bother them. As with everything else, we just have to tailor things to what works for us.

Judy

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine

Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.

Any doc that doesn't know about the positive RESEARCH done on probiotics and IBD is not in the loop and should be.

Steroid enemas do not get absorbed into the system the way oral steroids do, there's no comparison, rectal meds are going to target the area and treat it more effectively (faster and better with little to no side effects compared to oral steroids.

They both (specialist and GI) need to educate themselves with the latest info on IBD.

:)My bum is broken....there's a big crack down the middle of it! LOL :)

D_A, I totally agree. I cannot imagine a doc. saying that food has nothing to do with UC, or that it doesn't effect the symptoms. I know everyone has diff. experiences with foods effecting/not effecting them. But, what bothers me is that he can make such a confident, blanket statement, when there is no proof out there either way(that food effects/doesn't effect UC patients). I know u mentioned that u wouldn't take the diphenoxylate once a day, my husband actually takes it 3 times a day and loves the way it reduces the stress that one gets from urgency. We can actually finish a conversation even when he thinks he has to go. He can actually hold it. This is a HUGE relief for him. He's not as stressed. Thanks for the info. about drinking water. He is usually tired from the UC anyways, so he hasn't noticed a significant difference with this drug of being more tired.

suebear-thanks for your explanation about the Vitamin E. It helps to know why there are risks in taking it. At least I know there is a reason. So many people swear by it, that I figured it had to be good...but, that's a good reminder, that each person who suffers from this disease reacts differently to diff. medications. As u said Judilyn things have to be tailored to one's own body. That's what is so difficult to process.

pb4-the GI just seems a little too cautious about everything,( ex. steroid enema being absorbed) that my husband was just not getting the correct/strong enough meds. to get him into remission. I wish more doctors did promote probiotics. I think for some doctors, probiotics seems too "unmedical" to even suggest the use of them. That's why I didn't understand the specialist, he said probiotics are the future for UC patients, yet, he wasn't even suggesting any. How ridiculous!

Well, thanks so much again guys. I really appreciate your help. I guess we have to have faith in one doctor and that will be the specialist as u all have helped/guided us with the decision. It's scary to have to depend so much on one person and what if they fail you? Especially if you've been failed a few times. I guess we should be positive and look at it as a new beginning. Thanks again everyone! :)Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.Xifaxan-on and offCurrent meds. : Humira, Colazal 12/day, Probiotic-Align, Fish OilHas never gone into remission

My GI specialist told me that food has no effect...and I would have to agree with him for my case. The "good " and "bad" foods all went through me just as fast and painfully with my UC. He was open to the idea of probiotics but said that medicines should be considered first to induce remission, then play the trial game with the "good" and "bad" foods and probiotics to help maintain remission. I never went into remission so it threw that option out. I would stay off steroids if at all possible. Imuran, Remicade, 6-MP have their issues too...especially long term and they lose their effectiveness over time as well. GI doctor was very reluctant to use them and more reluctant to surgery than I was. Hopefully your husband can find something that works.

I would select a well versed UC specialist over any GI doctor. A GI doctor is a general doctor for the entire digestive system, where a UC specialist just focuses on UC issues. That's the difference between the two. Also, I would recommend a doctor that is in their late 30s to early 40s, they are old enough to have the knowledge of the most recent advances/techniques from medical school and have 10+ years of practical patient experiences and issues and are more likely to use the internet to keep updated on new advances. Hopefully, they can "connect the dots" as well. I never thought of that before, but it makes sense to me now.

It seems alot of UC people want to isolate their disease from their actual health. What you eat and drink affects your health and well-being whether you want to admit it or not.Proctitis DX 1998Lialda 1x dayHydrocort Enema As Needed

sodbuster19-sorry maybe I should have been more clear. The GI is my husband's regular GI and the specialist is a a UC specialist.

GISGuy31-I definitely agree with you about the age of the doc. The UC specialist(in his 50's)told us he never goes online...he said, "I stay away from that, I only go there to see where my patients are getting their info. from." But, it's hard to discriminate b/c of the age since finding a "good" UC specialist is hard enough. Btw, how are you feeling? Are you still feeling good after the surgery?

D_A - Don't many people on this forum state that food doesn't effect them? Are u saying that what you eat effects your health whether you have UC or not?

Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.Xifaxan-on and offCurrent meds. : Humira, Colazal 12/day, Probiotic-Align, Fish OilHas never gone into remission

I think what GI's are often saying when they say "diet doesn't matter" is that there is no evidence that any one diet helps or harms all UC patients. Doctors generally only recommend treatments that have been demonstrated through scientific research to have an effect on a significant percentage of patients. What would be more accurate is what my GI told me, which is "There's no evidence that any specific diet makes a difference. If something bothers you, don't eat it."

Doctors who treat people with any chronic illness tend to hate when patients go on the internet, because there's a whole lot of flawed, misguided and just plain bad information out there. If you look, you can probably find at least a hundred sites selling something to "cure" any disease. Often people take information from these web sites and stop their other medications. That's their right, but then when the condition comes back on them, they're sitting in the doctor's office expecting him or her to make them well again. Multiply that by several hundred patients and I think you can see why they'd feel the way they do.

Just as people without UC, our food tolerances are different. Now in remission, the foods I have to limit are the same ones that bothered me on occasion before I had UC. If I eat too much fatty or high-fiber food, I'll get loose stools. That's been all my life. Clearly these things irritate my digestive system when it's healthy, so when it's ulcerated I don't eat them.

And there's no question that food affects your health. Eat a constant diet of high-fat, heavily salted food and you'll end up with a heart attack or stroke in most cases. That's just the most obvious example.

Judy

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine

Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.

Yes, I'm now 12 weeks post-op and feel 100% normal again after they removed my colon. My energy level is about 90-95% now and I can do yard work again and eat out at restaurants again and eat everything with the ileostomy and travel. It's amazing how you forget about the little things you were not able to do before. I'm still discovering them daily. At work, I'm able to focus on reading detailed construction plans for hours at a time again without being tired or having to make 500 trips to the bathroom.

The only thing that's still a little tough to do is putting on socks and shoes and getting into and out of a car. The pain is mostly gone, just more of an uncomfortable feeling when bending over or getting into or out of a car otherwise I'm totally pain free. 8-10 weeks post op your almost pain free and getting around really easily.

In fact, I'm going to live this summer with the temporary ileostomy and have my j-pouch surgery pushed back into September or October so I'll be recovering and moving around before the holidays. If I need a 3rd surgery to reverse the ileostomy (if they don't do it during the next one), they could do that in January when nothing is going on and I don't have to do yard work at that time.

Mentally, I don't think of UC anymore, so that in itself is wonderful. I can also sleep all night without having to wake up...no more sleep deprivation. I empty the bag about 6 times a day and never experienced any of the dreaded leaks or accidents that some people reported...luckily. For me, surgery was really the cure for UC. I'm only taking Actonel for the osteoporosis, otherwise I'm drug free. I recommend it to anyone who has UC and cannot get into remission with drugs.

Judilyn-you made some great points. I can understand why docs. may say that about food. But, this UC specialist said my husband could even eat fried foods/steak!! I guess if he added if it doesn't suit u then don't have it, that might have seemed more on target. I guess some doc. are so immune to the reality of this disease that sometimes they don't realize how what their saying comes across.

GISGuy31-Glad to know you are doing well. You seem like a positive person...is that what helped u get through the pain of the surgery? I feel so pumped up when reading your posts about surgery. It gives me hope to know that there is something out there that can give my husband relief. Thank you!

Since food has been part of the topic, I would just like to ask what some of you eat for breakfast? My husband has been eating two bananas every morning since he was diagnosed. He feels safe with that. I would like to add some variety to his breakfast, before he goes bananas eating the same food!! (Sorry, bad joke!) Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.Xifaxan-on and offCurrent meds. : Humira, Colazal 12/day, Probiotic-Align, Fish OilHas never gone into remission

For the past 20+ years, I've had a boiled egg (odd time scrambled) and toast for breakfast. *I did eat rice bread for the first year of diagnosis...not bad toasted but mega expensive* I have rye toast with some marmalade and of course coffee. I didn't drink coffee when I was first diagnosed...tea was what I favoured.

Bananas give me most excrutiating gas...I rarely eat them. I'd never have them in the morning...for by afternoon, the gas would be unbearable. When I do eat them....I'd have them in the evening.

Regarding steak...broiled would be better. I have never had problem with meat. I think protein with every meal would be of benefit to your husband. I think about 3 ounces is the recommended amount. Not too much I don't think..chewed well and with something like potatoes or well cooked veggies.